In a time of racial reckoning, a new film looks at a very personal attempt to address racial injustices in this country.
“Ashes to Ashes” are the final words in typical African American funeral services. Many of those who were murdered by the Klan to maintain the reign of white supremacy never received their “Ashes to Ashes”.
Ashes to Ashes, the film, is an endearing portrait of Winfred Rembert, an avid Star Wars fan and master leather-work artist who survived an attempted lynching in 1967. This moving short documentary showcases the incredible friendship he has forged with Dr. Shirley Jackson Whitaker, as she creates and establishes an interactive art exhibit to memorialize the more than 4,000 African Americans who were lynched during the Jim Crow era. Taking all of her experiences from her love of medicine, art and people, Dr. Shirley J. Whitaker, MD, created the Ashes to Ashes program that will provide for a real memorial (funeral) service for the over 2 million lost during the Middle Passages.
FROM 1882-1968, 4,743 LYNCHINGS OCCURRED IN THE UNITED STATES. OF THESE PEOPLE THAT WERE LYNCHED 3,446 WERE BLACK (72%). THE MAJORITY OCCURING IN THE SOUTH (79%). This too is Black History.
The goal of the project by Dr. Shirley Jackson Whitaker is to acknowledge and mourn the African Americans who were racially terrorized during the Jim Crow era after the Civil War and until this very day. Some endured lynching and other forms of brutalization and therefore, they never received a proper burial. The ceremony was a celebration of thousands of African Americans. As we must. #BlackHistoryMonth2021
Dr. Whitaker will join us this week. Mr. Rembert is unable to join us tonight. We will host him soon.
Dr. Whitaker is the seventh child of Eddie and Charlie Mae Jackson from Waycross, Georgia. Dr. Whitaker attended Clark Atlanta University completing a BS degree with honors in Biology. She attended Yale University School of Medicine-Department of Public Health and obtained her medical degree form Emory University School of Medicine, the only female African American in her class. A kidney specialist by trade, an artist trained under Leonard Baskin, and a healer by passion, her Ashes to Ashes project was developed to provide hope for a better American future, one in which races of varying color and heritage can understand the importance of each other’s American history, empathize with each other’s sacrifices and tragedies, realize the legacy of impacts from suffered injustices and accept that healing is a process as much a cure, and recognize and lay to rest the 4,000 victims of vigilante justice perpetrated against a predominantly black population for simply desiring the most basic of American rights of obtaining an education, ownership of land, fair competition in commerce, the uniquely American right of voting for our governing institutions and for an equal stake in the American experience. She is currently working on the second phase of A2A: The Noose: Tread of Hate and Resilience. This will center on American history through the lens of lynching and will include an International Speak My Name Day to speak the names of the lynched.
Mr. Rembert grew up in rural Georgia, in a farm laborer’s house and later in the small town of Cuthbert. Raised by his great-aunt, Rembert worked with her in the cotton fields during much of his childhood, and received little formal education. As a teenager he got involved in the 1960s Civil Rights Movement. Jailed for fleeing for his life in a stolen car, nearly lynched and then cut down to serve as an example to others, Rembert was sentenced to 27 years in the Georgia Penal System. Despite the cruel prison circumstances, Rembert learned to read and write and managed to meet and write letters to his would-be wife Patsy as well as to congressmen, with the hope of gaining early release. He also learned the craft of hand-tooling leather from a fellow-prisoner. After seven years, most of which was spent on chain gangs, Rembert was released from prison, but it wasn’t until 1997, at the age of 51, that he began to work more seriously with leather as his artistic medium, creating tooled and dyed canvases that tell the stories of his life. His paintings have been exhibited at galleries across the country—including the Yale University Art Gallery, the Adelson Galleries New York, and the Hudson River Museum—and have been profiled in The New York Times and elsewhere. Rembert is the recipient of a 2017 USA Fellowship, and in 2015 was an honoree of Bryan Stevenson’s Equal Justice Initiative. Rembert’s full-color memoir, Chasing Me to My Grave: An Artist’s Memoir of the Jim Crow South, is forthcoming from Bloomsbury in 2021.
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The Rev. Dr. Kejuane Artez Bates was a big man with big responsibilities. The arrival of the novel coronavirus in Vidalia, Louisiana, was another burden on a body already breaking under the load. Bates was in his 10th year with the Vidalia Police Department, assigned as a resource officer to the upper elementary school. But with classrooms indefinitely closed, he was back on patrol duty and, like most people in those early days of the pandemic, unprotected by a mask. On Friday, March 20, he was coughing and his nose was bleeding. The next day, he couldn’t get out of bed.
Bates was only 36, too young to be at risk for COVID-19, or so the conventional wisdom went. He attributed his malaise to allergies and pushed forward with his second full-time job, as head pastor of Forest Aid Baptist Church, working on his Sunday sermon between naps. Online church was a new concept to his parishioners, and during the next morning’s service, he had to keep reminding them to mute their phones. As he preached about Daniel in the lion’s den — we will be tested, but if we continue to have faith, we will come through — he grimaced from the effort. That night he was burning up with fever. Five days later he was on a ventilator; five days after that, he died.
While COVID-19 has killed 1 out of every 800 African Americans, a toll that overwhelms the imagination, even more stunning is the deadly efficiency with which it has targeted young Black men like Bates. One study using data through July found that Black people ages 35 to 44 were dying at nine times the rate of white people the same age, though the gap slightly narrowed later in the year. And in an analysis for ProPublica this summer using the only reliable data at the time accounting for age, race and gender, from Michigan and Georgia, Harvard researcher Tamara Rushovich found that the disparity was greatest in Black men. It was a phenomenon Enrique Neblett Jr. noticed when he kept seeing online memorials for men his age. “I’ll be 45 this year,” said the University of Michigan professor, who studies racism and health. “I wasn’t seeing 60- and 70-year-old men. We absolutely need to be asking what is going on here?”
To help illuminate this gap in knowledge and gain a deeper understanding of why America has lost so many young Black men to COVID-19, ProPublica spent months gathering their stories, starting with hundreds of news articles, obituaries and medical examiners’ reports, then interviewing the relatives and friends of nearly two dozen men, along with researchers who specialize in Black men’s health. Our efforts led us to a little-known body of research that takes its name from one of the most enduring symbols of Black American resilience.
In interviews about the young men who died from the virus, a portrait emerged of a modern John Henry: hard-working, ambitious, optimistic and persistent, trying to lift others along with themselves. They were the very people communities would have turned to first to help recover from the pandemic: entrepreneurs who were also employers; confidants like coaches, pastors and barbers; family men forced into a sandwich generation younger than their white counterparts, because their parents got sick earlier and they had to care for them while raising kids of their own.
They were ordinary men. Time and again, it was their fight that was remarkable.
Bates, the only child of a single mother who supported him as a teacher’s aide, made it to Alcorn State University on football and choir scholarships. When his mother got sick with breast cancer, he had to drop out; after she died, he was almost destitute. Over the years, he built himself into multiple men at once, each a pillar to many others: the pastor whose flock depended on his counsel; the mentor known to school kids as Uncle Officer Bates; the assistant football coach and band director; the adoring father to 5-year-old Madison — his “heartbeat,” he called her. Recently he and his wife, Chelsea, a second grade teacher, had launched One Love Travel, organizing excursion packages and cruises as part of their long-term plan to build generational wealth.
He carried the stress of his efforts in his blood vessels, in his kidneys, in the extra pounds that accumulated with each passing year; he had diabetes and hypertension and at 6-foot-6, he was more than 100 pounds overweight. His official cause of death, on April 1, was COVID-19-related pneumonia and acute respiratory distress syndrome.
But Chelsea knows that the virus, no matter how powerful, didn’t kill her husband on its own. It was the years of working nonstop, taking care of other people more than himself, that wore his body down. And when the virus attacked, he couldn’t fight back.
In the summer of 1978, the social epidemiologist Sherman James, then a 34-year-old researcher at the University of North Carolina at Chapel Hill, met the man who would shape his life’s work. At 70, John Martin was a retired farmer who suffered from debilitating osteoarthritis and hypertension. He had peptic ulcers so severe that doctors had to remove 40% of his stomach. Recounting his story in his backyard rocking chair, his cane resting on his lap, the old man had no doubt why his health was so bad: “I worked too hard.”
Born in 1907, Martin grew up in a family of sharecroppers who were only paid half of what their labor in the tobacco fields earned. Throughout the South at the time, most Black farmers lived at the economic mercy of landowners who were employers, landlords and vendors all at once. Martin watched as the system ruthlessly exploited his father; after one particularly harsh winter spent hungry, Martin vowed he would be different. Borrowing $3,725 in 1941, he purchased 75 acres. He had 40 years to settle the mortgage but accomplished the near-impossible: He paid it off in five. “That’s the reason my legs [are] all out of whack today,” he told James.
James listened, spellbound, until Martin’s wife called out, “John Henry, it’s time for lunch.” At that moment, something clicked. Holy cow, James remembers thinking. “It was just like the ancestors were speaking to me.” The power of Martin’s story wasn’t simply that it echoed the legend of John Henry; it also echoed the life experiences of most of the working-class African American men James knew.
Five years out of graduate school, James was among a small group of researchers focusing on one of the most enduring public health problems in the United States: why health outcomes for Black men are so poor. Black men live shorter lives than all other Americans — 71.5 years versus 76.1 years for white men — and have for generations. Black men’s life expectancy didn’t reach 65, the eligibility age for Medicare, until 1995, 30 years after the federal health program for the elderly became law; white men were living into their mid-60s by 1950. The shorter lifespans reflect a broader disparity: Black people have much higher rates of hypertension, obesity, diabetes and strokes than white people do, and they develop those chronic conditions up to 10 years earlier. The gap persisted this year when the Brookings Institution examined COVID-19 deaths by race; in each age category, Black people were dying at roughly the same rate as white people more than a decade older.
For generations, public health experts mostly ignored the disparities. When they did pay attention, they invariably blamed the victims — their “unhealthy” behaviors and diets, their genes, the under-resourced neighborhoods they “chose” to live in and the low-paying jobs they “chose” to work. Their chronic illnesses were seen as failures of personal responsibility. Their shorter life expectancy was written off to addiction and the myth of “black-on-black” violence. Many of those arguments were legacies of the slave and Jim Crow eras, when the white medical and science establishment promoted the idea of innate Black inferiority and criminality to rationalize systems built on servitude and segregation.
Pondering the lessons of John Henry Martin, James began to see what many of his colleagues had been missing. It wasn’t just living in poverty that wore down Black men’s bodies, he hypothesized, but the struggle to break out of poverty. It wasn’t just inequality that made them sick, but the effort to be equal in a system that was fundamentally unjust. “It’s this striving to make something of themselves … to live their lives with dignity and purpose and to be successful against extraordinary circumstances,” James said. “They’re trying to make a way out of no way. It’s the Black American story.”
America has changed profoundly since Martin’s day. Yet the machinery of racial inequality continues to be omnipresent. It’s in the hospitals where Black newborns have significantly lower mortality if they’re cared for by Black doctors rather than white ones. In the redlined neighborhoods where poverty and pollution are concentrated — but not affordable housing or grocery stores or reliable internet. It’s in the crumbling, exploitative economies that force parents to risk their lives working long hours for low pay without sick leave. In mass incarceration and voter suppression. In the innumerable hurdles, one piled upon another, that make Black Americans’ climb up the socioeconomic ladder more daunting than ever, their successes more fragile and their setbacks more consequential.
“Everyone thinks about racism as something that is personally mediated, like someone insulting me,” said Linda Sprague Martinez, a professor at Boston University’s School of Social Work who conducts community health research with adolescents and young adults. “But the way in which it’s really pervasive is how it disrupts life chances and opportunity. … These are systems that are designed for you to fail, essentially, and for you to be erased and to be maintained in a certain position in our society.”
Challenging such a relentless machine, through “high-effort coping,” James concluded, requires three categories of personal traits that are major themes of the John Henry legend: tenacity, mental and physical vigor and a commitment to hard work. To measure them, he developed the John Henryism scale, with scores determined by how strongly people identify with 12 statements, including: “Once I make up my mind to do something, I stay with it until the job is completely done,” and, “It’s not always easy, but I usually find a way to do what really needs to be done.”
To score high in John Henryism, you don’t have to be Black or male or economically disadvantaged. But over the years, James and other researchers have found that Black people, especially those who are poor and working-class, do score high and tend to suffer greater cardiovascular risks, perhaps because the innumerable hurdles in their paths require greater effort to overcome. “The stress,” James said, “is going to be far more overwhelming than it has a human right to be.”
Stress is a physiological reaction, hard-wired in the body, that helps protect it against external threats. At the first sign of danger, the brain sounds an alarm, setting off a torrent of neurological and hormonal signals that whoosh into the blood, stimulating the body to fight or give flight. The heart beats faster and breathing quickens; blood vessels dilate, so more oxygen reaches the brain and muscles. The immune system’s inflammatory response is activated to promote quick healing. When the threat passes, hormone levels return to normal, blood glucose ebbs and heart rate and blood pressure go back to baseline. At least, that’s how the human body is designed to work.
But overexposure to cortisol and other stress hormones can cause the gears to malfunction. “Your body’s over-producing, always working hard to bring itself back down to the normal level,” said Roland J. Thorpe Jr., a professor at the Johns Hopkins Bloomberg School of Public Health and founding director of the Program for Research on Men’s Health at the Hopkins Center for Health Disparities Solutions. The constant strain “resets the normal,” he said. As blood pressure remains high and inflammation becomes chronic, the inner linings of blood vessels start to thicken and stiffen, which forces the heart to work harder, which dysregulates other organs until they, too, begin to fail. “Your body starts to wear down,” Thorpe said — a phenomenon known as weathering.
The cumulative effects of stress begin in the womb, when cortisol released into a pregnant woman’s bloodstream crosses the placenta; it is one of the reasons a disproportionate number of Black babies are born too early and too small. Then, exposure to adverse childhood experiences — anything from abuse and neglect to poverty and hunger — continues the toxic stream; too much exposure to cortisol at a critical stage in development can rewire the neurological system’s fight-or-flight response, essentially causing the brain’s stress switch to break. The more stress a youngster endures, the more likely he or she is to have academic, behavioral and health problems from depression to obesity.
Weathering isn’t specific to race, but it is believed to take a particular toll on Black people because of the unique, unrelenting stress caused by racism that wears away the body and the spirit, “just like you have siding on the house, and the rain or the sun beats on it, and eventually it starts to fade,” said Dr. Jerome Adams, the U.S. surgeon general under the Trump administration. Shawnita Sealy-Jefferson, a social epidemiologist at Ohio State University, says the human body isn’t designed to withstand such biological and emotional assaults: “It’s the same thing as if you revved the engine of your car all day, every day. Sooner or later, the car is going to break down.”
The effects of stress can be seen at the cellular level. Researchers have found that in Black people, telomeres — repeated sequences of DNA that protect the ends of chromosomes by forming a cap, much like the plastic tip on a shoelace — become shortened at a faster rate, a sign of premature aging. In a 2018 study examining changes in seven biomarkers in cardiac patients over a 30-year period, researchers found that Black patients weathered at an average of about six years faster than whites. And it was the extraordinarily high rates of hypertension in the Black community that prompted scientists to look at the impact of stress in the first place. By age 55, about 76% of Black men and women develop high blood pressure, versus 54% of white men and 40% of white women, which increases the risk of heart attacks and strokes.
Sustained stress has strong links to obesity, which Black children and adults have at much higher rates than whites. Some of this is physiological: The interplay between cortisol and glucose is complex and insidious, triggering metabolic changes that can lead to diabetes and other chronic diseases. Some of it is psychological and behavioral: Stress is strongly associated with depression and other mental health disorders. “The way that people deal with stress is by strategies that make us feel better,” such as comfort eating, said Thomas LaVeist, dean of Tulane University School of Public Health and Tropical Medicine. Stress and anxiety cause sleeplessness, which itself is correlated with weight gain. The result is often a cascade of health problems — hypertension, cardiovascular disease, metabolic syndrome — that strike early and feed off of each other.
Because Black Americans experience many forms of stress, often at once, researchers have more questions than answers about the specific role John Henryism plays in these outcomes. The study of Black men’s health remains an under-examined frontier, with little in the way of funding or will because “Black men are not viewed as sympathetic,” said LaVeist, and because so few go into the health research professions. He and Thorpe, the Johns Hopkins professor, co-founded the Black Men’s Health Project, the first large-scale national study focused solely on Black men’s needs, with a goal sample size of 5,000. They hope to learn how stressors like segregation and adverse early life experiences impact health outcomes.
If this segregated body of emerging knowledge were to grow and infiltrate the mainstream medical and research communities, James can only imagine how beneficial that would be. Health professionals could build deeper relationships with their patients by better understanding the sources of stress that wreak havoc on their cardiovascular systems. They could test for high blood pressure, diabetes and cholesterol levels more frequently and at younger ages. “Until we can have a society that is more just racially,” James said, “we do need to find these intermediate steps.”
As ProPublica examined the lives lost to COVID-19, themes emerged in the pressure points faced by many young Black men. The wearing down typically begins when they are boys and must become little John Henrys to navigate white spaces or push through the adverse experiences endemic to Black communities. It continues when they grow into men, as most need to navigate the public’s projections of danger with unwavering vigilance. The more they succeed, the more responsibility they feel to lift their families and communities with them, and with that, comes more stress.
As James listened to the stories ProPublica was gathering, he instantly recognized the cycle of striving and succumbing that he has been writing about for 40 years. “They could have done so much more had the struggle not been so intense,” James said. “They were cut down too soon.”
Thomas Fields Jr. was barely a year old when his father first went to prison. The loss altered the trajectory of his life in ways that many children wouldn’t have been able to overcome. His mother, just 17 when he was born, moved with him from the suburbs of Washington, D.C., to Detroit, where her own mother had recently relocated. The city was in freefall: manufacturing jobs were disappearing; crime was surging; middle-class and white flight was stripping away the city’s tax base, eroding vital services and causing schools to fail. Just waiting at the wrong bus stop could get you robbed or shot.
“When you’re a young male living in Detroit, if you live past 18, it’s like you’re 50 years old,” Fields, then 31, said on a Facebook Live chat last year. “I swear that’s how it feels.”
Mitigating childhood adversity requires deep wells of resilience; researchers say one of the best ways to build those reserves is having a nurturing caregiver. In this, young Thomas was exceptionally lucky. His mother worked two jobs and still managed to watch him like a hawk; she told him constantly that she loved him. His grandmothers looked after him after school and during summer breaks. His father, Thomas Sr., did his best to be involved from behind bars, urging him to not make the same mistakes. “I wanted this Thomas Fields to break the mold,” he said.
To do that, Thomas became a little John Henry. He got decent grades, stayed out of trouble and taught himself to cook — healthy food, not the junk so many of his peers ate. After high school, he attended Grambling State University in Louisiana for a couple of years, then joined the U.S. Navy, where he went from being a talented amateur chef to a trained professional. He also became a father. When there were setbacks, he was already planning his next move. It’s a strategy that Black adolescents absorb like the air they breathe and the water they drink, Sprague Martinez said. “The mentality is: ‘Even if this system is not designed to work for me … I’m going to win this game. I haven’t gotten the prize yet? I must not be working hard enough.’”
High-effort coping can confer mental health benefits even for children raised in the direst of circumstances. Dosha DJay Joi endured the kind of trauma that dooms many children — beatings, neglect, sexual abuse. Born in Chicago, he spent much of his adolescence in group homes in the Wisconsin system. For years he was afraid to talk about the abuse and scared to tell his birth mother he was queer. He learned to channel himself into education and advocacy, helping other LGBTQ and foster kids; he especially wanted to make sure children remained connected with their siblings. He was inspired to study social work because of what he’d been through, said his mother, Kecha Kitchens. “Then a family member got sick, and he didn’t like how the nurses were treating the other patients in the nursing home, so he wanted to become a nurse.”
By the age of 28, Joi had a bachelor’s degree in human services, he had trained as a substance abuse counselor and he was working toward his nursing degree. He served as a court-appointed special advocate for kids aging out of foster care and lobbied lawmakers in the Wisconsin capitol and Washington D.C., forming a special bond with Rep. Gwen Moore, who represents Milwaukee in Congress. But the years of hardship took an enormous physical toll; Joi suffered from hypertension, heart and lung problems and at his heaviest, he weighed more than 500 pounds. When COVID-19 arrived in the Midwest, he was particularly vulnerable. He died on May 14.
For young John Henrys, the psychological benefits of high-effort coping seem to be complicated by what’s happening inside the body. “Typically when you study resilience in any group, and [subjects are] doing well by our typical metrics” — going to college, getting a good job, not taking drugs — “we say, ‘Woo-hoo,’” University of Georgia researcher Gene Brody said. “Logically, we thought this would transfer to have health benefits.” But for Black young adults trying to climb the economic ladder, they found just the opposite. “When you look under the skin, doing blood draws and using other kinds of measures, they look like their health is starting to suffer.”
In more than 25 years spent tracking the health of Black families in rural Georgia, Brody and his colleagues found that adolescents identified by their teachers as being success-oriented already had higher “allostatic loads” — science jargon for wear-and-tear on the body — at age 19 than their peers. By age 25, those from more disadvantaged backgrounds who scored high on the John Henryism scale were more likely to have metabolic syndrome, a cluster of conditions that are precursors to diabetes and heart disease, than people from less disadvantaged backgrounds. Brody and his colleagues have dubbed this phenomenon“skin-deep resilience.” The same effects are not found for young white strivers.
In his late 20s, Fields was diagnosed with such a severe case of diabetes that his military career came to a screeching halt. When he returned to Detroit last year, he was a little brawnier, with more tattoos. “Diabetes was something that he was going to beat, because he wasn’t going to lose to anything,” said the Rev. Torion Bridges, one of his best friends for 20 years. He became a personal chef and motivational speaker, started a podcast and wrote a cookbook. He helped out his mom, who had multiple sclerosis. And he took a job as a “school culture facilitator,” working with kids who had discipline problems, at Paul Robeson Malcolm X Academy, the pioneering Afrocentric public school he had attended. He was especially good with troubled boys who didn’t have a father at home, said principal Jeffrey Robinson, his onetime homeroom teacher, later his boss. “He could identify with the feeling of the loss.”
In March, Fields and his mother caught the coronavirus at the same time.
She recovered. He did not.
To navigate life as a Black man is to be constantly vigilant. The ubiquity of racism means that everyday interactions, while driving or shopping or birdwatching, can have potentially dangerous outcomes. So John Henrys live in a heightened state of awareness, continually adjusting. It might mean placing family photos near the front door to quickly prove your son belongs should police ever respond. It often means being able to “strategically assimilate” — to assume a public identity aimed at neutralizing stereotypes of blackness and defusing irrational white fears. This, W.E.B. DuBois explained more than a century ago, is “double-consciousness, this sense of always looking at one’s self through the eyes of others, of measuring one’s soul by the tape of a world that looks on in amused contempt and pity.”
New York Times columnist Brent Staples would whistle Vivaldi in graduate school to signal that he was too cultured to be threatening. Darrell Hudson, who researches health disparities at Washington University in St. Louis, scans the closet each day before teaching class to select what he calls his “Non- Threatening Black Guy Uniform.”
“What’s not appreciated fully, I think, is how much energy it takes,” said Derek M. Griffith, professor and director of the Center for Research on Men’s Health at Vanderbilt University. “All of these different things that you have to do to modulate your body and so forth, all that additional attention that you have to pay to that, is a burden that most people don’t have to bear. It is a cause of weathering that we don’t fully appreciate.”
A 2014 study found that vigilance was positively associated with the prevalence of hypertension for Blacks but not whites. The more vigilant Black people were, the more the disparity grew. And researchers have found that Black people who are on guard against anticipated discrimination have higher blood pressures while they sleep. “When you experience racism or discrimination and it could cost your life, it’s good to be vigilant; but a prolonged and heightened state of vigilance is not good,” the University of Michigan’s Neblett said. “It can kill you in the end.”
Leslie Lamar Parker grew up in the Minneapolis suburbs, in a state that was 84% white. Like many John Henrys in this story, he was large — tall and wide — in a way that made him stand out to cruel classmates and clueless teachers. Bigness can be perilous for Black boys, who are often seen as older, stronger and less innocent than their white counterparts, stereotypes that underlie higher rates of school discipline and police violence. Parker learned to play the class clown and questioned authority. “School couldn’t hold his attention, not because he wasn’t smart. He wouldn’t go,” his mother, Tyuon Brazell, said. Because he wasn’t on track to graduate, she did what other parents might not and suggested he drop out his junior year. That’s when he started to thrive, earning his GED, graduating from college and becoming an IT specialist in his old school district, where he mentored students of color, ordering them lunch from DoorDash and supervising the tech club. “That was really important to him,” said his wife, Whitney, “making sure they didn’t fail any other brown kids like they failed him.”
One key to his coping was overcorrecting for how he might be perceived. Strangers would approach him to say how lovely it was to see him with his son and daughter, a microaggression masquerading as a compliment. He was so sensitive to stereotypes about absent Black fathers, his wife said, he was “a present parent on steroids.” To walk through the world as a Black man is to be simultaneously hypervisible and invisible, under surveillance yet never really seen. So he turned his wardrobe into a “conversation starter,” an expression of his irreverent personality but also armor against snap judgments about his imposingness. He carried a Spongebob SquarePants backpack to work and often wore a pro-wrestling or superhero T-shirt during off hours.
Parker was constantly scanning the horizon for threats against his family and his kids at school, wondering whether there was something more that he could do for them. He projected a cool demeanor, his argumentative wit camouflaging worries that his mother knew kept his head in overdrive. “I kept telling him: ‘Son, you need to rest. You don’t have to do everything in a day.’” He was diagnosed with high blood pressure at just 27 and worried it, and the extra pounds, would keep him from seeing his two children grow up. He died in May from COVID-19 at the age of 31.
Joshua Bush, who died in April of COVID-19, slammed up against racial stereotypes in his work as a nurse in South Carolina. There were funny looks from people who didn’t expect to see a Black man when he arrived at job interviews and white patients who refused to let him touch them. He told them, “That is your choice, but you’re missing out on great help,” his mother, Linda, recalled. He and his wife, LaKita, saw the health care industry as their route to upward mobility. She worked in hospital administration; at 30, he was studying to become a registered nurse, working as an LPN.
Bush also suffered from a rare enzyme abnormality that caused severe muscle cramps from overexertion, and because of it, trips to the emergency room weren’t uncommon. He’d come to accept that the first image doctors and nurses saw — someone Black and overweight — influenced their bedside manner. They treated him like he had no medical knowledge and lectured him about diabetes, though it had nothing to do with why he was seeking care. His experience informed the way he cared for his own patients, part of his “fight against the system,” his wife said. At the same time, she could see her husband’s stress “all over his body.”
Lifting as we climb, onward and upward we go. Words that started as a call-to-action at the rise of the Jim Crow South have become an enduring part of the African American experience — and can serve as a unique form of stress. The proverb was born of Black suffragist Mary Eliza Church Terrell’s belief that it was incumbent upon the growing Black middle and upper class to use their position to fight racial discrimination and help others rise through education, work and community activism. It is why Thomas Fields was told as a boy that he was “duty-bound” to give back to the community once he got an education. Why Dosha Joi advocated for young people in the system “because someone helped bring out the sunshine in me.”
“You’re socialized to say it’s not just about you. It’s really about what you’re going to do for your broader community and for your family,” Washington University’s Hudson explained. “People take it very seriously, trying to light a path for those behind them — even when they’re not necessarily in the most stable situation themselves. … But they’re lifting as they climb. That’s taxing. That’s a visceral stress.”
In the Brookhaven, Mississippi, of Eugene Thompson’s youth, Black business owners understood that Brookway Boulevard — at least the stretch that ran through downtown — was for white businesses. The election of Barack Obama was a turning point; Thompson figured if a Black man could become president of the United States, surely he could rent a modest space on “the Boulevard.” Publicly, his goal was to grow his client base by cutting white people’s hair, too. His family knew his aspirations were grander. “He wanted to do something in Brookhaven to help Black people to get off their knees,” his mother, Odell Edwards, said. “We are on our knees.”
It’s not easy earning a living in Mississippi, where the single most common job is working as a cashier and the $7.25 minimum wage hasn’t budged in a decade. Cutting hair came naturally for Thompson, who started on himself at 12. He attended a local beauty academy before he could afford to go to barber school and over the years took the same methodical approach to growing his business — buying secondhand equipment, doing the construction himself, all without bank loans, mentoring or government support.
But Thompson’s real ambition was to start his own school. “He always tried to encourage the boys in the community, or people who had been in prison and couldn’t find a job — ’I can teach you how to cut hair and you can have your own business,’” his younger sister, Dedra Edwards, said. After three years spent earning his teaching credential, Thompson opened his TaperNation Barber Academy for students last fall. Then he realized graduates needed places to work, so he launched his next project: renovating a second shop nearby where other barbers and hair stylists could rent chairs.
“It was running him ragged,” Odell said.
At 46, Thompson was severely overweight and suffered from lifelong respiratory problems as well as anxiety and sleeplessness. High blood pressure and diabetes ran in his family, but Thompson’s true health status was unclear — like more than 15% of Black people in Mississippi, he wasn’t insured and avoided going to the doctor except in an emergency. When he started feeling symptoms of COVID-19 in late March, he shrugged them off at first; he’d been having heart palpitations and panic attacks, which his family attributed to stress from work.
After he died in early April, leaving behind six children, TaperNation had to shut down. “You have to have a barber’s instructor license to keep it going, and no one else in the family has one,” his sister said. “We had to sell almost everything.”
Recent disasters — Hurricane Katrina, the Great Recession — have shown that Black communities aren’t just more vulnerable than white populations to economic and social dislocations; they recover more slowly. The impacts of the pandemic are likely to be magnified because so many deaths have occurred among Black people under age 60, the peak earning years when people raise families, start businesses, amass social capital and create lasting legacies. In addition to the lives it took, COVID-19 has robbed wealth that John Henrys were only beginning to accrue and toppled what they had begun to build for themselves and those around them.
In many cases, they were the structural beams, holding everything up. “These are people who help pay bills for people who aren’t their biological family members,” said Sealy-Jefferson, the Ohio State social epidemiologist. “They bring food when somebody dies. They watch kids when a single mother has to work.” Some of the biggest losses are intangible, she said: “social support, emotional support, resource sharing, encouragement, storytelling, role modeling— all of these things that are vital for African Americans in particular, given our history in this country.”
Fields couldn’t comfort students reeling from a crisis that has killed more than 1,600 of their loved ones and neighbors. “It’s a tremendous loss,” said Robinson, his principal. Bates’ wife, Chelsea, was too bereaved to go back to work when school resumed, which meant living off of her husband’s death benefits and savings; she focused on trying to help Madison process a grief she’s too young to understand. “Sometimes she lays on the floor and kicks and screams that she wants her daddy, that she misses daddy and why did he have to leave?” she said. “I tell her, I’m sorry, I wish that mama could do something to bring him back. I really do.”
Weekday mornings have been quiet without Kendall Pierre Sr. puttering around the house before sunrise so he could open his barbershop by 5 a.m. That’s when workers from nearby chemical plants would stop in for a cut or shave after their graveyard shifts. Sundays are different without his sermons at Mt. Zion Baptist Church, in the little town of Ama, Louisiana, followed by a family breakfast his son always looked forward to. “My grandmother would come. Some of my aunties and cousins. He would put Aunt Jemima batter in the waffle iron and say: ‘See? This is better than Waffle House!’”
Since his dad died in May of COVID-19, Kendall Pierre Jr., a 20-year-old student at Louisiana State University, has felt an overwhelming absence and, at the same time, his father’s equally consuming presence. “I can still hear him,” he said.
Don’t drive with your hoodie on.
Work twice as hard.
Real men don’t wear slippers in public; put on some shoes.
The only child of a single mother, 45-year-old Pierre Sr. took his role as father figure seriously. To nieces and nephews, he was Uncle Dad. To his sons’ basketball teams, he was Coach Kendall with the pep talks.
If a task has begun, never leave it until it’s done.
Be the labor great or small, do it well or not at all.
When players couldn’t afford uniforms or travel for tournaments, he would pay. “Their parents would send them with all they could, which was sometimes only $5,” Pierre Jr. said. They could count on him for food, deodorant, even a haircut. “He would bring his clippers to make sure all the players looked nice.”
When the killing of George Floyd roiled the country, Pierre Jr. had no doubt about how his father would have reacted. He would have talked to officials at the sheriff’s office, school board administrators, government leaders. He would have organized community meetings at the church.
We’re living in troubled times.
His son thought about that when his friend texted him about organizing a Black Lives Matter protest. “Since my dad passed, I’ve had this newfound courage, and this urge to act on things … to just do things outside of my comfort zone,” he said.
On a Saturday morning in June, 400 people joined in the 2.6-mile march from Westbank Bridge Park to St. Charles Parish Courthouse. A local reporter covered it and interviewed Pierre Jr. for a story. “If we don’t speak about systemic racism and police brutality, no change will ever happen,” he said. “I feel like it’s something that I have to do and be a part of something bigger than just me.”
He knows his father would have been proud. His mother was. But she worries, too. Her husband didn’t make enough time for doctor’s appointments to monitor his Type 2 diabetes, nor did he get much sleep. “I would tell him, ‘Kendall, you need to rest,’” recalled Sabrina, his wife of 24 years and a registered nurse. “He would say he could rest when he’s dead and gone.”
She knows how much goes into taking care of yourself as a Black man and thinks about that every time her sons walk out the door; her daughter, too. “Lord, I pray for them. … I tell them: ‘Put the seat belt on, drive the speed limit. Make sure you don’t get any tickets.’ I don’t want them to get stopped by a cop.” Her husband’s stature in the community conferred a kind of protection. “Because of my husband and who he was, people would be looking out for my sons. We don’t have that anymore.”
Zipporah Osei and Mollie Simon contributed reporting.
Art Direction by Lisa Larson-Walker.
About the Art
Elliott Jamal Robbins, 32, is an artist who works in a variety of media, including drawing, printmaking, sculpture and video/animation. He has exhibited artworks in group and solo exhibitions in New York, Chicago, Miami, Berlin and the Netherlands. This is how he described his thinking behind the art in this story:
For me, the story of John Henry presents problems. Namely, its focus on the physical attributes of the man and celebrating the labor that killed him. In the original tale, John Henry is almost Christlike in his willingness, if not gleeful, in sacrificing his own body. In my own work, I’m always more drawn to the mundane scene. Rather than consider the figure of John Henry as a type or didactic prop to expound the ills of systemic racism, I decided to focus a narrative as though from the point of view of the subject, and we witness his day-to-day experiences as he does.
Beginning on the bus, we are reminded of this as the site where African Americans fought for the basic human right to sit where they chose. From one mode of transportation to another, the horseback rider recalls the notion of the American west, which most often represents a connection to the land, and freedom. In contrasting the horse from the rider, we see that while one figure experiences a kind of liberation, another body is at work which propels this motion. This relationship between horse and rider is a corollary for the relationship between John Henry and the train, a mechanical achievement that would bring with it the promises of cross country travel, commerce and economic prosperity.
The story of John Henry is a means of making visible the unseen labor, exploitation and oppression of nation building. In this way I want to consider the real impact of systemic racism on those experiencing it daily, as well as decentralize the notion of racial violence from images of murdered black men and women. Instead, I want to consider how violence is enacted everyday, and its key actors are those who participate in systems which are propped up by the degradation of others.
Clarification, Dec. 24, 2020: This story was updated to clarify a figure on Black infant mortality.
Black patients were losing limbs at triple the rate of others.
The doctor put up billboards in the Mississippi Delta.
Amputation Prevention Institute, they read.
He could save their limbs, if it wasn’t too late.
The Black American Amputation Epidemic
by Lizzie Presser
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IT WAS A FRIDAY EVENING in the hospital after a particularly grueling week when Dr. Foluso Fakorede, the only cardiologist in Bolivar County, Mississippi, walked into Room 336. Henry Dotstry lay on a cot, his gray curls puffed on a pillow. Fakorede smelled the circumstances — a rancid whiff, like dead mice. He asked a nurse to undress the wound on Dotstry’s left foot, then slipped on nitrile gloves to examine the damage. Dotstry’s calf had swelled to nearly the size of his thigh. The tops of his toes were dark; his sole was yellow, oozing. Fakorede’s gut clenched. Fuck, he thought. It’s rotten.
Fakorede, who’d been asked to consult on the case, peeled off his gloves and read over Dotstry’s chart: He was 67, never smoked. His ultrasound results showed that the circulation in his legs was poor. Uncontrolled diabetes, it seemed, had constricted the blood flow to his foot, and without it, the infection would not heal. A surgeon had typed up his recommendation. It began: “Mr. Dotstry has limited options.”
Fakorede scanned the room. He has quick, piercing eyes, a shaved head and, at 38, the frame of an amateur bodybuilder. Dotstry was still. His mouth arched downward, and faint eyebrows sat high above his lids, giving him a look of disbelief. Next to his cot stood a flesh-colored prosthetic, balancing in a black sneaker.
Fakorede explained that he wasn’t the kind of doctor who cuts. He was there because he could test circulation, get blood flowing, try to prevent any amputation that wasn’t necessary. He hated that doctors hadn’t screened Dotstry earlier — when he’d had the stroke or lost his leg. “Your legs are twins,” he said. “What happens in one happens in the other.”
Dotstry needed an immediate angiogram, an imaging test that would show blockages in his arteries. He also needed a revascularization procedure to clean them out, with a thin catheter that shaves plaque and tiny balloons to widen blood vessels. His foot was decaying, fast. Though Fakorede ran an outpatient practice nearby, when doctors consulted him on inpatients at Bolivar Medical Center, the local hospital, he expected to use its facilities.
He asked his nurse to schedule the procedures. But by the time he had driven home to his ranch house on the northern edge of town, he hadn’t received an answer. Nor had he when he woke up on Saturday at 3:30 a.m., as he did every morning. By sunrise, he was restless at his kitchen counter, texting the hospital’s radiology director, explaining the need for an intervention on Monday, Martin Luther King Jr. Day. Within a few hours, he got a response: “I don’t have the staff or the supplies. I’m sorry.”
Now Fakorede was mad, walking briskly into his office, dialing friends on speaker phone, pacing around his conference room. He’d been raised in Nigeria, moved to New Jersey as a teenager and had come to practice in Mississippi five years earlier. He’d grown obsessed with legs, infuriated by the toll of amputations on African Americans. His billboards on Highway 61, running up the Delta, announced his ambitions: “Amputation Prevention Institute.”
Nobody knew it in January, but within months, the new coronavirus would sweep the United States, killing tens of thousands of people, a disproportionately high number of them black and diabetic. They were at a disadvantage, put at risk by an array of factors, from unequal health care access to racist biases to cuts in public health funding. These elements have long driven disparities, particularly across the South. One of the clearest ways to see them is by tracking who suffers diabetic amputations, which are, by one measure, the most preventable surgery in the country.
Look closely enough, and those seemingly intractable barriers are made up of crucial decisions, which layer onto one another: A panel of experts decides not to endorse screening for vascular disease in the legs; so the law allows insurance providers not to cover the tests. The federal government forgives the student loans of some doctors in underserved areas, but not certain specialists; so the physicians most critical to treating diabetic complications are in short supply. Policies written by hospitals, insurers and the government don’t require surgeons to consider limb-saving options before applying a blade; amputations increase, particularly among the poor.
Despite the great scientific strides in diabetes care, the rate of amputations across the country grew by 50% between 2009 and 2015. Diabetics undergo 130,000 amputations each year, often in low-income and underinsured neighborhoods. Black patients lose limbs at a rate triple that of others. It is the cardinal sin of the American health system in a single surgery: save on preventive care, pay big on the backend, and let the chronically sick and underprivileged feel the extreme consequences.
Fakorede grabbed his car keys and headed to the hospital. He walked straight to the lab. As he suspected, it had all the supplies that he needed. Why won’t they give me staff? he wondered. They wouldn’t do that to a surgeon.
He has little tolerance for this kind of transgression. He is militaristic, to an extreme. To him, nonhealing wounds are like heart attacks. “Time is muscle,” he repeats. He calls huddles when nurses forget to check a patient’s ankles: “If you haven’t assessed both legs, I don’t want to walk into that room.” He considers each of his procedures an act of war. When people stand in his way, he sends a barrage of text messages, punctuated by exclamation marks. And he uses his cellphone to collect evidence that the system is working against his patients, and his efforts.
He pulled out his iPhone and photographed the hospital’s wires and catheters, IVs and port protectors. He shot the images over to the hospital’s radiology director. Fakorede’s private practice was closed for the holiday weekend. He calculated that he had only a few days to carry out some plan before Dotstry’s remaining leg was amputated.
TWO MAPS EXPLAIN why Fakorede has stayed in the Mississippi Delta. One shows America’s amputations from vascular disease. The second shows the enslaved population before the Civil War; he saw it at a plantation museum and was stunned by how closely they tracked. On his phone, he pulls up the images, showing doctors, or history buffs, or anyone who will listen. “Look familiar?” he asks, toggling between the maps. He watches the realization set in that amputations are a form of racial oppression, dating back to slavery.
Fakorede was initially tempted to move to the Delta while practicing in Tennessee. He befriended a medical device sales rep named Maurice Hampton who had grown up in the Mississippi region. Hampton talked about how black families were leery of local hospitals and how few black doctors in the Delta specialized in vascular work. “It’s the norm to go to Walmart and see an amputation or a permacath in the neck,” he’d told Fakorede. “If you don’t see one, then you didn’t stay but two minutes.”
Then, a little over a year into his Tennessee job, Fakorede found himself at loose ends. He’d raised concerns that he was being billed for expenses that weren’t his and asked for an audit; though the audit later found that the clinic where he worked had claimed over $314,000 in improper expenses, he was quickly terminated. Fakorede sued the clinic for retaliation under the False Claims Act and lost. (The clinic’s lawyer said his client had no comment, but there were “numerous” reasons for Fakorede’s departure.) In the spring of 2015, he had a mortgage, a quarter of a million dollars in student debt and four months of severance pay. He also had an impulse to understand the Delta.
Fakorede spent four days driving through its long, flat stretches of farmland dotted with small towns and shotgun houses. The wood-slat homes and bumpy roads reminded him of his grandparents’ village in the Nigerian state of Ondo, where he’d spent summers as a kid. He drove scores of miles on the Mississippi highways without seeing a single grocery store; fast-food chains lit the busiest intersections. He was startled by the markers of disease — the missing limbs and rolling wheelchairs, the hand-built plywood ramps with metal rails. He thought of amputees like “an hourglass,” he said, “that was turned the day they had their amputation.” Mortality rates rise after the surgeries, in part, because many stop walking. Exercise improves circulation and controls blood sugar and weight. The less activity a person does, the higher the risk of heart attacks and strokes. Within five years, these patients were likely to be dead.
Fakorede weighed taking a lucrative job up north, near his parents, who had both been diagnosed with diabetes. He had professional connections there; he’d gone to Rutgers Robert Wood Johnson Medical School and done a residency at NewYork-Presbyterian Weill Cornell Medical Center. But the South, he felt, needed him. About 30 million people in America had diabetes, and Mississippi had some of the highest rates. The vast majority had Type 2; their bodies resisted insulin or their pancreas didn’t produce enough, making their blood sugar levels rise. Genetics played a role in the condition, but so did obesity and nutrition access: high-fat meals, sugary foods and not enough fiber, along with little exercise. Poverty can double the odds of developing diabetes, and it also dictates the chances of an amputation. One major study mapped diabetic amputations across California, and it found that the lowest-income neighborhoods had amputation rates 10 times higher than the richest.
The Delta was Mississippi’s poorest region, with the worst health outcomes. Fakorede had spent years studying health disparities: African Americans develop chronic diseases a decade earlier than their white counterparts; they are twice as likely to die from diabetes; they live, on average, three years fewer. In the Delta, Fakorede could treat patients who looked like him; he could find only one other black interventional cardiologist in the entire state. A growing body of evidence had shown how racial biases throughout the medical system meant worse results for African Americans. And he knew the research — black patients were more responsive to, and more trustful of, black doctors. He decided after his trip that he’d start a temporary practice in Mississippi, and he rented an apartment deep in the Delta.
He fantasized about building a cardiovascular institute and recruiting a multidisciplinary team, from electrophysiologists to podiatrists. But as he researched what it would take, he found a major barrier. Medical specialists with student debt, who graduate owing a median of $200,000, generally could not benefit from federal loan forgiveness programs unless they got jobs at nonprofit or public facilities. Only a few types of private practice providers — primary care, dentists, psychiatrists — qualified for national loan forgiveness. The Delta needed many other physicians. Though Bolivar County was at the center of a diabetes epidemic, there wasn’t a single diabetes specialist, an endocrinologist, within 100 miles.
Fakorede leased a windowless space in the Cleveland Medical Mall, a former shopping center that had been converted to doctors’ offices. People came to him with heart complaints, but he also asked them to remove their socks. Their legs alarmed him. Their toes were black and their pulses weak. Their calves were cold and hairless. Some had wounds but didn’t know it; diabetes had numbed their feet. Many had been misdiagnosed with arthritis or gout, but when Fakorede tested them, he found peripheral artery disease, in which clogged arteries in the legs limit the flow of blood.
This is what uncontrolled diabetes does to your body: Without enough insulin, or when your cells can’t use it properly, sugar courses through your bloodstream. Plaque builds up faster in your vessels’ walls, slowing the blood moving to your eyes and ankles and toes. Blindness can follow, or dead tissue. Many can’t feel the pain of blood-starved limbs; the condition destroys nerves. If arteries close in the neck, it can cause a stroke. If they close in the heart, a heart attack. And if they close in the legs, gangrene.
Within a month, Bolivar Medical Center had credentialed Fakorede, allowing him to consult on cases and do procedures in the hospital. His most complicated patients came in through the emergency room. Some arrived without any inkling that they had gangrene. One had maggots burrowing in sores. Another showed up after noticing his dog eating the dead flesh off the tips of his toes. Fakorede took a photo to add to his collection. “It was a public health crisis,” he told me. “And no one was talking about amputations and the fact that what was happening was criminal.”
On weekends, Fakorede had been driving back to his five-bedroom home in Tennessee, but in August of 2015, he decided to go all-in on Bolivar County. He sold his house and black Mercedes G-Wagon, and applied for funding to build a practice in the Delta: Cardiovascular Solutions of Central Mississippi. He pitched himself as a heart guy and a plumber, removing buildup in the arteries. Four banks denied him loans, so he borrowed money from friends. He gave himself a two-year window to reduce amputations and publish his outcomes.
THE DELTA FLOOD PLAIN runs 7,000 square miles along the northwestern edge of the state, with sweet-smelling, clay-like soil cordoned between bluffs and the banks of the Mississippi River. By the 19th century, the primeval forests had been transformed into a cotton empire; at the start of the Civil War, more than 80% of people in many Delta counties were enslaved. Sharecropping emerged after emancipation, and black farmers cultivated small plots in return for a portion of their crop. They lived on credit — for food and feed and clothing — until the harvest, but even then, their earnings rarely covered their expenses.
For decades, African Americans in the South struggled to find and afford health care. The American Medical Association excluded black doctors, as did its constituent societies. Some hospitals admitted black patients through back doors and housed them in hot, crowded basements. Many required them to bring their own sheets and spoons, or even nurses. Before federal law mandated emergency services for all, hospitals regularly turned away African Americans, some in their final moments of life.
Fakorede was drawn to Bolivar County, in part, because of its history. He’d run out of gas there when he was first scouting the region, and later that evening, he’d Googled its background. For a brief moment, Bolivar was the center of a movement for public health care, driven by the conviction that racial equality was not possible without justice in health. In 1964, when a group of physician activists traveled to the Delta, Robert Smith, a black doctor from Jackson, saw rocketing rates of intestinal parasites and maternal death. “I understood for the first time what it truly meant to be black in Mississippi,” he told a magazine. Under President Lyndon B. Johnson’s War on Poverty, a Boston doctor secured funding to open a community health center in Bolivar, which he grew with the help of Smith. Clinicians worked with residents to take on housing, sanitation, exercise and nutrition. Its success spawned a national project of more than a thousand Federally Qualified Health Centers for the underserved. But funding shrank under President Richard Nixon, and the centers’ initiatives were scaled back to basic primary care.
By the time Fakorede moved to the Delta, in 2015, the state had the nation’s lowest number of physicians per capita. It had not expanded Medicaid to include the working poor. Across the country, 15% of African Americans were still uninsured, compared with 9% of white Americans. That year, Jennifer Smith, a professor at Florida A&M University College of Law, wrote in the National Lawyers Guild Review what Fakorede saw firsthand: “While the roots of unequal and inequitable health care for African Americans date back to the days of slavery, the modern mechanisms of discrimination in health care has shifted from legally sanctioned segregation to inferior or non-existent medical facilities due to market forces.”
Fakorede understood that to reach patients, he needed referrals, so he met primary care providers at hospitals and clinics. He asked them to screen for vascular disease, measuring blood pressure at the ankle and the arm. Many didn’t have the time; given the shortage of local physicians, some were seeing up to 70 patients a day. Others didn’t know much about peripheral artery disease or why it was important to diagnose. Some were offended by Fakorede’s requests. Michael Montesi, a family doctor, was grateful for the help, but he found it brash for the new doctor in town to start telling the veterans what to do. He recalled thinking, “Where were you the first 12 years of my practice, when I needed a cardiologist, when I needed an OB-GYN, when I needed a surgeon, when I had to do an amputation in the ER, or deliver a baby that was 23 weeks and watch the baby die because there was nobody there that could take care of him?”
The brushoffs disturbed Fakorede, but when he dug deeper, he realized that the doctors weren’t only overwhelmed; they had no guaranteed payment for this vascular screening. The Affordable Care Act mandates that insurers cover all primary care screenings that are recommended by the U.S. Preventive Services Task Force, an independent panel of preventive care experts. The group, though, had not recommended testing anybody without symptoms, even the people most likely to develop vascular disease — older adults with diabetes, for example, or smokers. (Up to 50% of people who have the disease are believed to be asymptomatic.) As specialists, cardiologists are reimbursed if they screen patients with risk factors. But by the time patients got to Fakorede, the disease was sometimes too far along to treat. Many already had a nonhealing wound, what’s known as “end stage” peripheral artery disease, the last step before an amputation.
When Luvenia Stokes came to Fakorede, she had already lost her right leg at the age of 48. Like many Delta residents, she grew up in a food desert, and without money for fresh produce, she’d developed diabetes at a young age. She said that a pedicurist nicked her toe, and the small cut developed an infection. Without good blood flow, it began bubbling with pus. Stokes told Fakorede that no doctor had performed an angiogram to get a good look at the circulation or a revascularization to clean out the arteries. A surgeon removed her second toe. Without cleared vessels, though, the infection spread. Within weeks, a new surgeon removed her leg.
Stokes lived in a single-wide trailer with her mother. Her wheelchair could not fit in the doorways, so she inched through sideways with a walker. Because she could hardly exercise, she gained 48 pounds in two years. The amputation hadn’t treated her vascular disease, and a stabbing pain soon engulfed her remaining leg, “like something is clawing down on you,” she said. When she finally made it to Fakorede, she told him that one doctor had prescribed neuropathy medication and another had diagnosed her with arthritis. “I’m not letting them get that other leg,” Fakorede told her. Stokes’ grandmother, Annie, who lives in a nearby trailer, had lost both her legs, above the knee, to diabetes. Her cousin Elmore had lost his right leg, too.
General surgeons have a financial incentive to amputate; they don’t get paid to operate if they recommend saving a limb. And many hospitals don’t direct doctors to order angiograms, the most reliable imaging to show if and precisely where blood flow is blocked, giving the clearest picture of whether an amputation is necessary and how much needs to be cut. Insurers don’t require the imaging, either. (A spokesperson for America’s Health Insurance Plans, a leading industry trade association, said, “This is not an area where there is likely to be unnecessary surgery.”) To Fakorede, this was like removing a woman’s breast after she felt a lump, without first ordering a mammogram.
Nationwide, more than half of patients do not get an angiogram before amputation; in the Delta, Fakorede found that the vast majority of the amputees he treated had never had one. Now, he was determined to make sure that no one else lost a limb before getting the test. This wasn’t a controversial view: The professional guidelines for vascular specialists — both surgeons and cardiologists — recommend imaging of the arteries before cutting, though many surgeons argue that in emergencies, noninvasive tests like ultrasounds are enough. Marie Gerhard-Herman, an associate professor of medicine at Harvard Medical School and a cardiologist at Brigham and Women’s Hospital, chaired the committee on guidelines for the American College of Cardiology and the American Heart Association. She told me that angiography before amputation “was a view that some of us thought was so obvious that it didn’t need to be stated.” She added: “But then I saw that there were pockets of the country where no one was getting angiograms, and it seemed to be along racial and socioeconomic lines. It made me sick to my stomach.”
Stokes wasn’t at immediate risk of losing her left leg when she met Fakorede, but pain prevented her from walking. She had a severe form of the disease, and Fakorede booked her for an angiogram and revascularization. He inserted a wire into her arteries and cleaned out the clogged vessels, letting oxygen-rich blood rush to her remaining foot. While she was recovering in Fakorede’s lab, she thought about her neighbors who had the same problems. “I really don’t like what’s happening to us,” she said to me. “They’re not doing the tests on us to see if they can save us. They’re just cutting us off.”
Patients didn’t know about vascular disease, or why their legs throbbed or their feet blackened, so Fakorede went to church. The sales rep, Hampton, introduced him to pastors, and several times each month, he stood before a pulpit. He told the crowds that what was happening was an injustice, that they didn’t need to accept it. He told them to get screened, and if any surgeon wanted to cut off their limbs, to get a second opinion. In the lofty Pilgrim Rest Baptist Church, in Greenville, he asked the congregation, “How many of you know someone or know of someone who’s had an amputation?” Almost everyone raised their hands.
At first, Fakorede took a confrontational approach with colleagues. Some seemed skeptical that he could “prevent” amputations; it’s a tall claim for a complex condition. Once, when a doctor had disregarded his advice, he’d logged it in the electronic health record, so the oversight would be on display for anyone who looked up his patient’s chart. Fakorede could fume when people questioned his authority; self-confidence carried him, but it sometimes blinded him to his missteps. Over time, though, Fakorede tried to rein in the arrogance. “You peel off a layer that may be comprised of: I’m from up North, I know it all, you should be thankful we’re here to provide services that you probably wouldn’t get before.” He picked up some Southern manners. Fakorede began texting doctors with photos of their patients’ feet along with X-rays of their arteries, before his intervention and afterward. Referrals picked up, and within a year, he’d seen more than 500 patients.
But Bolivar Medical Center, he learned, was turning away people who couldn’t pay a portion of their revascularization bill upfront. Several former employees told me the same. “It’s a for-profit hospital, it’s no secret, it’s the name of the game,” Fakorede said. “But a for-profit hospital is the only game in town in one of the most underserved areas. So what happens when a patient comes in and can’t afford a procedure that’s limb salvage? They eventually lose their limbs. They’ll present back to the emergency room with a rotten foot.” And a surgeon would have no choice but to amputate. (A hospital spokeswoman said that last year, it gave $25 million in charity care, uncompensated care and uninsured discounts. Asked if it turned away patients who couldn’t pay for revascularization, she did not respond directly: “We are dedicated to providing care to all people regardless of their ability to pay.”)
The practice was discriminatory, he reasoned, and also financially backward. At $237 billion in medical costs each year, diabetes is the most expensive chronic disease in the country; one of every four health care dollars is spent on a person with the condition. Left untreated, the costs pile on. Medicare spendsmore than $54,000 a year for an amputee, including follow-ups, wound care and hospitalizations; the government program is the country’s largest payer. Then come the uncounted tolls: lost jobs, a dependence on disability checks, relatives who sacrifice wages to help with cooking and bathing and driving.
By the time Carolyn Williams came to see Fakorede, in 2016, she’d been uninsured with diabetes for 20 years; she’d worked at a housing nonprofit and for a food assistance program, but neither had offered coverage. At the age of 36, she’d needed a triple bypass surgery, and at 44, she had three toes amputated. Untreated leg pain left her needing a wheelchair; she pulled out of Delta State University, where she was pursuing a degree in social work. Fakorede reconstituted blood flow in her legs and got her walking. But the diabetes was already destroying her kidneys. She joined the government’s disability rolls. She also went on dialysis, at a yearly cost to Medicare of $90,000.
On the days when Fakorede wanted to give up and leave, he drove to an Emmett Till memorial in Money, Mississippi. After 14-year-old Till was mutilated and murdered, in 1955, his mother had insisted on opening his casket. “Let the people see what I’ve seen,” she said, and his image brought national outrage to racist violence in the South. Fakorede thought often about how that decision sparked the Civil Rights movement. He thought about it as he exhibited his photos of rotten feet and limbless bodies, his own proof of what he considered a modern atrocity. He didn’t want to live by Bolivar Medical’s policies. He decided that in order to treat as many people as possible, irrespective of income or insurance, he needed to build a lab of his own.
THIS JANUARY, THAT LAB was now Dotstry’s best shot. The hospital’s consulting surgeon expected to amputate his leg below the knee. He had written that because Dotstry’s kidneys were impaired, the contrast dye in an angiogram would be dangerous. But Fakorede could replace the dye with a colorless gas, which wouldn’t jeopardize Dotstry’s health.
It would have made the most sense to perform the procedure at the hospital; Dotstry had been admitted and was occupying a bed. But after Fakorede opened his outpatient lab and hired away two techs and a nurse, a spokeswoman said the hospital stopped doing certain interventions. She told me it shouldn’t have surprised Fakorede that they couldn’t schedule Dotstry’s case, and that if he had been unable to treat a patient in his lab, the hospital could have worked with him to find another. Fakorede told me he’d never received such a message. When a doctor asks him to treat an inpatient with an acute condition, his responsibility, as he sees it, is to do it in the hospital. “If I don’t have a hospital that wants to coordinate,” he asked, “what do I do?”
The answer, at least this time, was to get his patient out of there. He called Dotstry’s doctor and convinced her to discharge him for the intervention. Then, at noon on Saturday, Fakorede walked back into Room 336. Dotstry’s sister, Judy, was standing by his bed. She wore tall leather boots over acid-washed jeans, with a thick, black wig in a braid down her back.
Fakorede handed over his card. “I called the hospital to see if we can do this case on Monday,” he said, “and they said no.”
Judy inhaled. “What now?”
Fakorede laid out the plan for a Monday morning angiogram in his own procedure room. He would open up as many vessels as he could. If he could get circulation to Dotstry’s foot, he might be able to save it. He wasn’t sure about the toes.
When Dotstry had suffered his stroke several years back, Judy had become his caregiver. She’d stopped taking jobs in home care and supported her brother without pay — shuttling him to doctors’ appointments, controlling his sugars, managing his medications. After his amputation, she’d helped him learn to walk again. In place of a salary, she’d drawn disability for an old work injury; she’d been electrocuted while operating a machine, and the nerves in her arm were damaged, making her hands tremble. But she couldn’t stay unemployed forever. This past fall, she had gone back to work, cleaning the local post office.
After Fakorede left, Judy looked over at her brother, who sat slumped over the side of the cot, a blue gown slipping off his bony shoulders. Their father had been a sharecropper, and Dotstry had dropped out of elementary school to help on the farm, harvesting soybeans, rice and cotton. Of 10 kids, he was the oldest boy, and he took care of the others, bringing in cash and cooking them dinner. They almost never saw a doctor. Instead, they’d relied on cod liver oil, or tea from hog hoofs, parched over a fire.
Dotstry had spent his career driving tractors, hauling crops and plowing fields, but he wasn’t insured and still rarely saw doctors. At 60, when he was diagnosed with Type 2 and prescribed insulin, he didn’t know how to manage the medicine properly; he had never learned to read. Insulin pumps were too expensive —more than $6,000. His blood sugar levels often dropped, and he sometimes passed out or fell on the job. Little by little, his employer cut back his duties. In 2015, he had a stroke; diabetes had raised his risk. A year later, his right foot blackened and was amputated at the ankle. The infection kept spreading, and soon, his lower leg went. He could no longer work.
Two of his sisters had died after complications of diabetes. Judy had stood over their beds like she was now standing over Dotstry’s. He’s still here, she reminded herself.
She pulled out her phone and called another brother. “They gonna amputate his foot, cause it’s bad,” she said. “Toe’s rotted.”
Dotstry looked up from the bed. “No!” he shouted. “They can’t take that off. Why?”
“Why you think your foot look like that? Why you think it smells? It stinks!” she said. Dotstry reached down to unwind the gauze. Judy wondered why he hadn’t told her that his foot was infected sooner. She lowered her voice. “You were doing pretty good. If you wasn’t, I could have tried to get back in there and do something.”
Her daughter, Shequita, ran into the room, huffing. She was loud and pissed off. “Whose foot is that?” she shrieked. She kneeled by the cot and helped Dotstry scoot up onto his pillow, stretching out his legs. He was usually a prankster, a hard-headed contrarian, the uncle who’d picked her up and spun her around like an airplane. She was thrown off by how quiet he’d become.
“Your daughter wants to know if you want to come stay with her, if you want to come to Texas,” Shequita told him.
Dotstry knew the offer was on the table, but he hadn’t yet accepted. A few days earlier, a tornado had torn the roof from his trailer, and he was, for the moment, without a home.
“She said it’s a lot better doctors up there,” Shequita continued, “and if she gotta stop working to take care of you, she can do that.” She gripped her hands around the frame of the bed and leaned over it, locking her eyes with his. “I need you to be thinking hard about this, sir. This ain’t you. I need you to get back to you.”
“He ain’t gotta go to Texas,” Judy interrupted.
Shequita shot back: “You gonna take care of him?”
Judy was silent. She knew that she couldn’t, not like before. She needed her paycheck for home repairs; a flood had warped her wooden floors. But Dotstry’s daughter was younger, and Judy thought that if she quit her job at Walmart, she’d get restless. Besides, Dotstry knew no one in Texas. She pictured him in a wheelchair, staring off, confused about where he was. Judy figured if he went, he’d go on and die.
She crossed her arms. “He’ll be all right if they don’t have to amputate that leg,” she said.
Shequita looked at her mother. She walked over to where she stood, by a shaded window, and threw her arms around her neck. Then, she left the room. Judy hoisted herself up onto the foot of her brother’s cot. She swung her legs up so that she faced him, and she laid herself down.
ABOUT EVERY FIVE YEARS, the doctors and researchers who make up the U.S. Preventive Services Task Force reassess their screening guidelines. In 2018, the members returned to peripheral artery disease and the blood flow tests that Fakorede had asked local primary care doctors to conduct. Once again, the panel declined to endorse them, saying there was not enough evidence that the tests benefited the average asymptomatic American.
In their statement, they acknowledged that public commenters had raised concerns that the disease “is disproportionately higher among racial/ethnic minorities and low-socioeconomic populations” and that this recommendation “could perpetuate disparities in treatment and outcomes.” In response, the panel said it needed better evidence. But as the National Institutes of Health has found, minorities in America make up less than 10% of patients in clinical trials.
Dr. Joshua Beckman, the director of vascular medicine at Vanderbilt University Medical Center, was an expert reviewer of the evidence base for the task force, and its final report struck him as irresponsible. It hardly noted the advantages of treatment after screening; the benefits were right there in the data that he saw. The panel discounted the strongest study, a randomized control trial, which demonstrated that vascular screening, for men ages 65 to 74, reduced mortality and hospital days. (The study bundled peripheral artery disease screening with two other tests, but in Beckman’s eyes, the outcomes remained significant.) He was confused about why the task force had published its evaluation of screening the general public, when it was clear that the condition affects specific populations. Several American and European professional society guidelines recommended screening people with a higher risk. “You wouldn’t test a 25-year-old for breast cancer,” he told me. “Screening is targeted for the group of women who are likely to get it.”
Dr. Alex Krist, the chair of the task force, repeated the group’s position in an email that the data was not strong enough to endorse screening, even for at-risk patients. “The Task Force does not do its own research, so we can’t fix these research gaps, but we can — and did — ring the alarm bell to raise awareness of this vital issue among researchers and funders.”
Vascular surgeons who have spent their careers studying limb salvage have come to see preventive care as perhaps more important than their own last-ditch efforts to open blood vessels. Dr. Philip Goodney, a vascular surgeon and researcher at Dartmouth and White River Junction VA Medical Center, made a name for himself with research that showed how the regions of the country with the lowest levels of revascularization, like the Delta, also had the highest rates of amputation. But revascularizations aren’t silver bullets; patients still must manage their health to keep vessels open. Now, Goodney believes his energy is better spent studying preventive measures earlier in the disease’s progression, like blood sugar testing, foot checks and vascular screening. Many patients have mild or moderate disease, and they can be treated with medicine, counseled to quit nicotine, exercise and watch their diet. “We need to build a health system that supports people when they are at risk, when they are doing better and when they can keep the risk from coming back,” he told me. “And where there’s a hot spot, that’s where we need to focus.”
Fakorede scrolled through the task force’s statement. “You want more data? Really? Who has the highest amputation rates in America?” he asked. “That’s your data.” He had taken to the national stage, speaking at conferences about what he’d witnessed in Bolivar. On behalf of the Association of Black Cardiologists, he testified before Congress, convincing U.S. Rep. Donald M. Payne Jr., a Democrat from New Jersey, along with U.S. Rep. Gus Bilirakis, a Republican from Florida, to start a Congressional Peripheral Artery Disease Caucus. The group is pushing for the task force to reevaluate the evidence on screening at-risk patients, for federal insurers to start an amputation prevention program and for Medicare to ensure that no amputation is allowed before evaluating arteries. Other groups are advocating for legislation that would require hospitals to publicly report their amputation rates.
In Bolivar, Fakorede had seen more than 10,000 cardiovascular patients from around the Delta. Dr. DeGail Hadley, a primary care provider in town, told me that before Fakorede arrived, he wasn’t sure what was best to do for patients with rotting feet. “It was always a process of transferring the patients to Jackson or Memphis, which can be difficult.” Both cities were two hours away. Now, Fakorede was performing about 500 angiograms annually in town. Last year, he published a paper in Cath Lab Digest describing an 88% decrease in major amputations at Bolivar Medical Center, from 56 to seven. (Fakorede did not provide me with all of his sources.) The hospital has different internal figures, which also reflect a significant decrease. Between 2014 and 2017, the hospital recorded that major amputations had fallen 75% — from 24 to six.
Fakorede couldn’t catch everyone in time, and he was haunted by the patients who got to him too late. A week before he’d met Dotstry, Sandra Wade had come in with an open sore on her right big toe. She came from a family of diabetics. Her mother had died after a diabetic coma. Her cousin had just lost a leg. Her oldest sister, who’d raised her, had given up on walking when a tired, burning, itching sensation consumed her legs. Now, Wade felt it, too.
“I don’t want to give up like that,” Wade had said, reclining in a cot in Fakorede’s pre-procedure room. “I want my toes. I don’t want to lose not one limb. I choose life.” She elongated her O’s. She was 55 and had a high, gentle voice, a wide smile and big, curled lashes under loose, curled hair. She had spent most of her career in food service and retail, recently managing a Family Dollar, but after diabetes took her eyesight, she’d had to quit. She wondered if the sodas and chips that had fueled her at the store had accelerated her disease. Or if she’d focused so much on her son, who was developmentally disabled, that she’d neglected herself. She didn’t like to offload blame onto her genes. “Somebody’s gotta try to change the cycle,” she’d said. “I really want to be the one.”
Fakorede inserted an IV into the top of her leg. He opened up each of her blocked arteries, one at a time, until he got to the most important one, which ran along her inner calf. It was supposed to supply blood to her open wound, and she needed it to heal. Without it, she’d likely lose her toe. If she didn’t control her sugars, she could lose her lower leg next. Fakorede was hopeful as he slid a wire through the vessel in her knee, and into that crucial artery in her calf. But then, about a third of the way down, it stopped. It was as if the vessel itself had evaporated.
UNDER A CRISP, WIDE SKY, on Martin Luther King Jr. Day, churches around town were opening their doors for services. Fakorede’s office was scheduled to be closed, but he’d called in his nurses and radiology technicians, even those out hunting deer, to staff Dotstry’s case.
“What’s up, young man?” Fakorede greeted Dotstry, who was slowly fading into his Ambien, and he handed Judy a diagram of a leg. “The prayer is that we can find this many vessels to open up,” he said, pointing to the paper. “As soon as I’m done, I’ll let you know what I find.”
In the procedure room, he put on his camouflage-patterned lead apron, and with an assistant, he inserted an IV near Dotstry’s waist. He wound a wire across Dotstry’s iliac artery, into the top of his left leg. The femoral artery was open, even though it had hardened around the edges, a common complication of diabetes. They shot a gas down the arteries in Dotstry’s lower leg so the X-ray could capture its flow. Fakorede looped his thumbs into the top of his vest, waiting for the image. Other than a small obstruction, circulation to the toes was good. “They don’t need to whack off the knee,” he said, staring at the screen. Dotstry would lose one toe.
After they’d cleaned out the plaque, Fakorede called Judy into the lab and pulled up the X-rays. Dotstry snored in the background. The doctor showed Judy a playback of the blood moving through the vessels. She could tell that his foot had enough flow. She folded over, running her palms along her thighs. “Y’all have done a miracle, Jesus.”
Dotstry would need aggressive wound care, help controlling his sugars and a month in rehab following his toe amputation. In the meantime, Judy and her daughter would have to learn to manage his antibiotics and find him an apartment. He’d still be able to tinker with his cars, as he did most afternoons. And as far as Judy was concerned, he wasn’t moving to Texas.
Fakorede scrubbed out. He sat at his desk to update Dotstry’s doctors. He called an infectious disease specialist, 35 miles south, to check on whether he could see Dotstry the following morning. Then, he dialed the hospital and asked for one of the nurses. He explained what he’d found: that Dotstry didn’t need a leg amputation.
“Oh, great,” the nurse replied. “The surgeon was calling and asking about that. He called and tried to schedule one.”
Fakorede had been typing up notes at the same time, but now he stopped. “He was trying to schedule it when?” he asked.
“He was trying to schedule it today.”
ABOUT THE REPORTING
For this story, Lizzie Presser spent over a month in Mississippi, in December and January, speaking with dozens of patients and shadowing doctors, in clinic and in procedures. She interviewed over a dozen medical professionals whose work has intersected with Fakorede’s, including nurses, limb-salvage specialists, primary care providers and the hospital’s consulting surgeon, Dr. Roger Blake, who corroborated all facts related to his treatment plan for Henry Dotstry. She asked Bolivar Medical Center if it believed it provided Dotstry with adequate care. Even with Dotstry’s permission, the hospital declined to comment on his case, citing patient privacy.
The scenes in the story are informed by her own observations and interviews with the subjects to fill in details, including their thoughts at the time.
To put her observed reporting into national context, she reviewed the salient medical research and interviewed more than a dozen experts in all corners of the health care system, from those who treat diabetic patients to those who inform and set policies around care.
Lizzie Presser covers health, inequality and how policy is experienced for ProPublica.